Bill 175: An Act to establish Sickle Cell and Thalassemia Care Ontario and to proclaim Sickle Cell and Thalassemia Awareness Day

We need your support: Ontario citizens living with sickle cell and thalassemia diseases need your support now more than ever. Support Bill 175 by signing petition forms and writing your Member of Provincial Parliament to support the Bill. We thank you in advance for your time.

Preamble: Sickle cell and thalassemia disorders are debilitating genetic diseases that can cause organ dysfunction, limit an individual’s quality of life and shorten their lifespan. There are more and more children and adults in Ontario who have sickle cell or thalassemic disorders, although there are significant gaps in research about the prevalence of the disorders. It is estimated that 5 per cent of the world’s population are carriers of genetic traits for sickle cell or thalassemic disorders.

The Province of Ontario is leading the way among provinces in recognizing the seriousness of sickle cell and thalassemic disorders. In 2006, Ontario established screening programs to identify newborns who have sickle cell or other blood disorders. The next step is to provide provincial co-ordination of comprehensive healthcare. This is crucial for ensuring that individuals and families have lifelong access to quality healthcare, genetic counselling and social support.

Sickle Cell and Thalassemia Care Ontario is intended to improve the co-ordination of healthcare resources, promote awareness and education and advocate on behalf of individuals who have sickle cell or thalassemic disorders and their families.

In co-operation with healthcare professionals, hospitals, research institutions and advocacy groups, Sickle Cell and Thalassemia Care Ontario will develop provincial strategies for improving the co-ordination and quality of sickle cell and thalassemia healthcare.

Proclaiming June 19 as Sickle Cell and Thalassemia Awareness Day in Ontario increases awareness of these blood disorders and dedicates a day to support individuals who have sickle cell or thalassemic disorders and their families.

SCAGO is a proud member of the Sickle Cell Disease Association of Canada (SCDAC). Founded in 2012, SCDAC is the national body regulating patient advocacy and support in Canada. It currently has 6 member organizations.